Emmerdale star John Middleton: 'It's vital we show the truth about dementia on TV'

BEFORE Emmerdale star John Middleton began filming the harrowing storyline in which his character, vicar Ashley Thomas, develops vascular dementia, the 62-year-old actor admits he knew little about the condition.

John Middleton's Emmerdale character, Ashley Thomas, develops vascular dementia in a new storyline

“Like many people, I knew vaguely about dementia but lumped it in with Alzheimer’s disease,” he explains. “Alzheimer’s itself has become a catch-all phrase for the various forms of dementia but you just can’t generalise. It’s totally different across the board.”

Indeed there are many different types of dementia although some are more prevalent than others. Dementia itself is an umbrella term that describes the symptoms that occur when the brain is affected by certain diseases or conditions.

Symptoms can include memory loss, mood changes and communication problems. Currently there are 850,000 people living with dementia in the UK.

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About 65 per cent of those have Alzheimer’s disease, while vascular dementia (which Ashley has) affects roughly 150,000 people. Vascular dementia results from problems with blood supply to the brain, for example after a stroke or due to a history of vascular disease.

Decline can be sudden and dramatic as it is accompanied by mini strokes. “It’s one of the forms of dementia that is least helped by drugs,” explains John. “In storytelling terms it’s the most dramatic form.”

This was clearly referenced in a recent Emmerdale episode that centred on Ashley and his wife Laurel’s wedding. Having suffered a mini stroke on the day, Ashley wakes up the following morning completely unaware of what has happened.

“From my research it became clear that the predominant feeling of those with dementia is one of abject fear, and this is what Ashley experiences after the wedding,” he says. “He’s not sure of the situation he is in at all. He’s extremely upset and frightened. He wants to remember but can’t.”

The predominant feeling of those with dementia is one of abject fear

John Middleton

The Alzheimer’s Society, which works to help those affected by any form of dementia, was called upon to advise on scripts to ensure Ashley’s symptoms and diagnosis are a realistic representation. A dementia support worker visited the Emmerdale set to recommend to John how best to deliver some of the trickier scenes.

The charity’s chief executive Jeremy Hughes says: “Properly scripted storylines like these can be a useful way to help many more people understand the impact of dementia.” While researching the role, John also visited a specialist care home in Ilkley, West Yorkshire, to meet families affected by the condition.

“Dementia isn’t just about memory loss, there are issues including spatial awareness and negotiating stairs,” says John. “There are so many symptoms I hadn’t known anything about.”

ITV

John called the experience 'eye-opening'

Having no previous family connection with dementia, John admits the experience was eye-opening. “We were obviously in a very different position to the families. We knew nothing of these people before dementia. It’s very upsetting for those close to them.

"They will have known them as a mother, father or even as a captain of industry. With dementia they are totally incapable of being these things. Without wishing to sound patronising, they have become childlike, totally dependent on care, totally unaware of where they are.”

Some of the stories from the families he encountered have been heartbreaking, especially when it comes to how people living with dementia are sometimes treated. “I recently spoke to a woman whose husband has dementia,” says John.

“They’d been in a coffee shop when her husband’s behaviour had become a little eccentric. A member of staff asked if they’d like somewhere more private to drink their coffees which they thought was lovely. Then they were shown into the disabled toilet. Can you imagine?” he says outraged.

The Alzheimer’s Society argues that dementia is the most feared health condition of our time and this being Dementia Awareness Week, the charity is encouraging people to face those fears head-on. So does John, who lives in Harrogate, North Yorkshire, with his wife Christine and their sons George and Jack, worry about what could lie ahead?

“Doing this you’d be a fool not to think about your own mortality but I don’t dwell on it,” he says. “I’m very lucky I can go back to a happy home and keep myself distracted. I walk the dog a lot, keep active and eat well but that’s as far as I go. It would be very depressing if I took it home with me every night.”

John acknowledges the popular ITV soap has a responsibility to present dementia realistically. “We have to get Ashley’s story right,” he says. “Dramas such as ours can be looked down upon as sensationalising issues which is why we’ve been keen to do a lot of research and involve everyone.

“I maintain our story will come from their stories. They are so rich, it would be idiotic to not use them.”

GETTY

John visited a specialist care home as research for the plot

Since Ashley’s storyline has been screened, John has been amazed by the number of people who now approach him to talk about their experiences and some have even told him how they fear they have it. He says it has brought home the responsibility that he has to help raise awareness.

“If Emmerdale can portray what it’s like for those with dementia and those caring for them in a truthful, accurate and honest way then I will be pleased with the job we’ve done,” he says.

This is Dementia Awareness Week (May 15-21). Find out more at alzheimers.org.uk/DAW or call 0300 222 1122.